Participate in a research project

Participants Required:

You are invited to participate in this research if you are an autistic person, or you are the parent/carer of an autistic person, and you are over the age of 18 and you live in Australia.

Brief Description of Project:

The purpose of this research is to understand the experiences of the Australian autistic community when obtaining an autism diagnosis and accessing supports. It also aims to understand the perspectives and opinions about testing for autism likelihood during pregnancy. Autism identification relies on a clinical assessment of behavioural characteristics, so there are no diagnostic tests for autism during pregnancy. However, by the time developmental differences are generally observed in children, lengthy delays for a clinical assessment are often experienced. This can further delay confirmation of whether a child is autistic, delay access to individualised supports during the child’s critical period of development and can lead to difficulties for parents in knowing the best way to build a strong connection with their child and a strong sense of identity within their child. As a result, a US based study found that 80% of parents would pursue genetic testing to identify an increased likelihood of autism if one was available, even if the test could not confirm or rule out a diagnosis (Narcisa et al., 2012). However, there is little research on this topic in Australia. Therefore, we will be asking the autistic community what they understand about biomarker research, and whether they are favorable toward autism likelihood testing during pregnancy. Despite the ongoing worries about genetic testing, many autistic families remain engaged in autism genetic and biomarker research. Almost 3000 autistic children and their families have contributed to the Australian Autism Biobank, which is a repository of biological, behavioural, environmental, and medical information about Australian autistic children and their families. When Lilley et al. (2023) interviewed them about their participation, parents expressed concern that autism research may lead to eugenics. Parents also spoke of their autistic child’s uniqueness and value and are understandably concerned that biomarker research may lead to reproductive choices or pre-birth interventions that will ‘eliminate autism’ and consequently de-value their children. However, reasons for participating in the biobank included hopes for earlier identification of autism, particularly for girls, to facilitate access to earlier supports, and to improve knowledge of autism causation, to eliminate stigma, guilt, and mother blame. Therefore, we want to understand the experiences of the broader autistic community, and the experiences of parents of autistic children, to identify any barriers or challenges faced in Australia with confirming a child is autistic.

If you agree to participate, you will be asked to complete an anonymous online survey. Questions ask about your attitude toward, acceptance of, and concerns relating to autism likelihood testing during pregnancy. It also asks about your experiences when accessing services and supports within Australia. Some questions ask about sensitive topics, including genetic testing, child developmental differences, and termination of pregnancy. Please do not continue with this survey if you think any of these questions may be too confronting or may cause you distress. The survey should take approximately 60 minutes to complete. You can choose to complete the survey in one go, or you can save your responses and return to complete and submit the survey at another time.

SURVEY